Autistic challenges

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GypsySue
GypsySue Member Posts: 17
edited June 2021 in Stage IV/Metastatic Breast Cancer ONLY

Being a high functioning autistic woman presents specific challenges when interacting with medical professionals. I received my de novo metastatic dx back in 2013, Of course, like all of us, I was emotionally immobilized by the severity of the dx. I was shocked to be told that my treatment would be “palliative”. I thought at that time, although I didn’t ask, that I had only a few months left to live. Luckily, here I am, 7 years on, with no discernible progression.

As great a challenge for me, as an autistic, was the despair I felt…the advance knowledge of my lifelonginability to satisfactorily interact with other people…specifically an oncologist. I ask questions but don’t feel they are understood. I get responses but still don’t know where my onc is coming from or what he may be implying.

Anyway, I’m wondering if there are other autistics in this community who have similar experiences? I cope by trying to educate myself on the particulars of me dx and tx and looking for new treatments on the horizon. My onc is unwilling to discuss these with me.

Best wishes to all.

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  • ARmom4
    ARmom4 Member Posts: 163
    edited June 2021

    Hi GypsySue! My son is on the spectrum. He doesn't have cancer, I do. However, I felt compelled to respond. My son also struggles with the inability to satisfactorily interact with others. This is a real challenge! I understand. Does the current oncologist know about your autism? If he doesn't know, maybe you should tell him. Explain that you have a different learning style and tell him what you need. If he does know about your autism and just doesn't care to try to understand you, it's time for a new oncologist. Your oncologist is a life-long partner with you and you should have someone you're comfortable with that is patient and kind who listens and understands you. You can research other oncologists near you and choose someone you like. Good luck to you!

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  • gailmary
    gailmary Member Posts: 332
    edited June 2021

    Sue, so sorry to hear of the challenges you face. My daughter is autistic.. I think you expressed yourself well. Great to hear your 7 years out from dx. I too

    Cope by educating myself.

    And my doctor won't discuss potential future treatments either. He said politely it is a waste of our time. I may never need those treatments. We won't know what I will need and when. By then it might or might not mutate which would determine what the tx should be. By then there may be a new drug to use. More chemo is going to pill from. I may never need a port for IV chemo.

    Tell him when you don't understand his replies. .Does your clinic have a team member like a nurse navigator that can help you?

    Gailmary

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  • Nola70115
    Nola70115 Member Posts: 85
    edited June 2021

    Hi Sue. I’m another mom of an autistic daughter. I know that’s not the same as having personal experience as a person on the spectrum. I can imagine the frustration though. Doctors often are not very good at communication with any patient. It’s even harder for you. You might want to ask for a consultation appointment with a Nurse Practitioner or Physician’s Assistant in the oncologist’s office. I’ve found they can answer most of my questions about treatment but aren’t as rushed as the doctor. Definitely tell them you have challenges with communication and let them know what works best for you. Maybe written conversation by email is easier for you so you would have time to think and compose your questions. You could also ask to audio record the appointment so you could listen to it again later, or bring somebody with you who you are comfortable with that could help with communication and remembering the conversation later on.

    If nobody in the doctors office is useful I’d ask if the hospital has a patient advocate that can help with communication with doctors.

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  • GypsySue
    GypsySue Member Posts: 17
    edited June 2021

    Thank you, friends, for your sympathetic words and helpful advice. I really appreciate it and will consider what you have suggested.

    I don’t want to give the impression that I don’t appreciate the care my oncologist has given me. It has all been appropriate and he is kind and tolerant. I have to accept that he wants to keep our relationship superficial.

    Also, I know that my emotional issues pale in comparison to the physical challenges that many here are dealing with.

    Best Wishes to all

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited June 2021

    GypsySue,

    If it’s any comfort, communicating with our mo’s or any doctor can be challenging even if not on the spectrum. This is not to invalidate your circumstances but just to say many of us can feel what you’re dealing with. Take care

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  • GypsySue
    GypsySue Member Posts: 17
    edited June 2021

    Yes, I agree that we all share similar challenges when interacting with doctors and that it is equally frustrating.

    What is specific to autistic people is how we are wired to respond (or not respond). I try to be careful not to blame eveything on autism. I know that each person has to cope with their own unique personality challenges.

    Still Just wondering if there are other autistic women in this community.

    Best Wishes!


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